The Boston Marathon is a prestigious race steeped in tradition, and a dream for many runners. I knew ever since I started chasing this dream it would be for someone else not just me. A dream can change you, and that change can inspire another. A dream can help others rise. I just never knew how much my story would have that opportunity when I started this long road.
In honor of dreams, second chances, and thankfulness I am raising funds for the Muscular Dystrophy Association. Many who raise money know someone with one of these rare disorders, but unlike them I will be racing Boston in a handcycle living with one. I have what we believe is Brody Syndrome a slow moving non dystrophic myopathy that is extremely rare. My story is one of moments that shaped and defined me. Moments where I see how lucky I am for not just a second chance but that I had the first chance at this dream. My hope is my moments leading to my biggest racing dream help raise funds, awareness, and hope for all the Muscular Dystrophy, neuromuscular disease community. I hope to show others with my situation a new way to rise, and a life well lived to those who have never seen the destruction a muscle disease leaves in it's wake. The MDA funds critical research that will help change lives allowing more to live better ones. Those funds come through people sharing stories and donating to this cause. I am one of the lucky ones please help my moments give that luck to another. Our lives are about the moments and this moment though my dream has the capacity to change another's.
What is a moment in the comparison to a year, a decade, a Life? Some may say a moment is nothing, but a moment is the basic block of every thing in our lives. Our lives are made not so much by the years that change us but by the moments that shape us. A single moment can inspire a dream, crush a dream, change a life, or end it. What if an end isn't an end but a new beginning? How often are ends really just second chances that force us to change our methods entirely? If you were forced to face one of these pivotal moments would be brave enough to take it? Would you have the resources to change your way entirely and climb the mountain you nearly crested but were knocked from just inches from the top? The 2020 Boston Marathon is that rare second chance for me. It is the culmination of pivotal moments that have upended who I thought I was entirely and yet reaffirmed who I am at the same time. These are the moments that have defined not just a dream but a metamorphosis of self:
2003 meeting my greatest inspiration to be better my daughter
2006 autoimmune arthritis diagnosis. I was told eighty percent are disabled in twenty years.
2007 deciding to take care of what I have and running a 5k. I fell in love with the sport.
2007 being told I couldn't pursue a full marathon with my disease
2008 completing a century ride
2009 completing a triathlon
2010 meeting my greatest cheerleader my husband
2010 completing a half marathon
2012 completing a half iron man
2013 seeing the Boston Bombing with friends on the course and asking what if.....
2014 after being pulled from multiple starts completing a full marathon
2015 my last 20 miler at a pace that would have put my next marathon within 10-15 minutes of a Boston qualifier.
2016 Labral tear that put me on track for a hip replacement, coming back to running despite this and on the bad hip.
2016 six and change paced single mile
2017 my final half that I celebrated as a comeback not knowing it was my end. Gait issues and all I finished my slowest half thankful to run again.
August 21 2017 " You can never toe another half or full marathon. Your autonomic nerves are broken"
My world crashed who was I now? A wheel is not a toe!
October 2017 thanks to amazing people I was fitted to a handcycle
February 2018 my first handcycle half
April 2018 my last 5k on foot thanks to an amazing friend who acted as a guide so I could say goodbye to a sport I loved
June 2018 finding in pt I had irreversible atrophy and my long standing gait issues would not be fixable.
October 2018 after 7 attempts with the marine corps marathon I started and finished.
October 2018 after failing gait therapy I hired a trainer who has helped me accept what I can't change and rise to change what I can.
April 2019 Boston Qualifer
September 2019 Acceptance to Boston
November 2019 a referral out to get a confirmation for Brody Syndrome a 1 in 20 million slow moving paramyotonia that atrophies fast twitch fibers first.
These moments I am thankful for. I wouldn't wish them on anyone, but this is my journey. I stand firm with the statement I made in 2018 to hold the torch high no matter which road I had to take that I would never give up. I want that torch to light the fire in the hearts of others. I want research, and treatments. I want to see people with conditions like my own see there is another way and attempt their dreams any way possible. Those things happen with a lot of help from people like you. Donating to the MDA and sharing my story will help thousands of others some who deserve the chances I've had far more than I do. Please help us give back those moments to dream to those who believe they can't.